Xolair appointment

I am going to see the consultant two weeks today about possibly being put on Xolair I feel like I’ve got a million questions to ask and just wondered if anyone who’s been through this can help me, thank you 😊

[EmmaF91 Community Ambassador]

Hi

I was on xolair for about 6/7months last year (then mepo, now benra 😅). Fire away any questions you have. There are a few on here either on xolair or with experience of it so someone’s sure to have an answer

[K8ty25]

Hi. I get xolair injections. I am not an expert but if I can help at all I will

[Hidden]

Thank you these are the questions I’ve got so far-

If I do get on to the treatment how will I find out?

How long will I have to wait for before after ect?

Will I be able to get reduced parking?

Does it hurt?

Is there a set day?

How likely am I to get the treatment?

When can I inject it myself?

[EmmaF91 Community Ambassador in reply to Hidden]

1. Can take a while. Depends on referral and on approval etc. For me it was spoken about for 2 years by my local before I got it (a very long story and very rare) but once my spec hosp said I needed it I was on it about a month later

2. Usually for the first few doses you have to linger for up to 3 hrs (depends on hosp) after that it can reduce down to 20 mins. Some people feel a benefit after the first dose. Others it can take up to 6 months to notice anything.

3. Depends on the hospital but worth asking about

4. Not really. A little stingy or burnt sometimes. Other times pain free. (At least in my experience)

5. Depending on weight/IgE level it will be either fortnightly or monthly. Once you’re on a day they try to stick to it (who will usually juggle to the best day for you... again depends on the hosp)

6. Can’t comment. Lots of factors. But if your con is confident you need and you’ll get then it’s more likely

7. Depends on the area and how you react to it etc. Self injection is a relatively recent thing (and I’m not sure if xolair has this service yet. Tho have just heard that it’s in the works tho not for anyone who has ever had anaphylaxis)

Hope that helps.

[Hidden in reply to EmmaF91]

Thank you that helps me loads! X

[Lizzie1956]

Hi

I’ve been on xolair for well over a year & it’s been a complete game changer for me.

Went on then after loads of admissions every year, & getting definitely worse

Felt no different first few months, but then it seemed to kick in.

First 3 times I had to wait in hospital for 2 hours, then 30 minutes after that.

Sometimes they sting, but not always.

Touch wood, I’ve never had an anaphylactic response, so this year I was offered the opportunity to self inject. I was trained fully & I've got a fantastic medical team who support me. I do have 2 epi-pens with me at all times now though.

The injections are couriered to me every 3 months now, and I see consultant and Asthma sister regularly.

As I say, an absolute game changer for me; no hospital admission in 11 months, 1 short course of steroids & same with antibiotics.

Anything else, just ask.

Liz x

[Hidden]

That sounds so good I’m hoping that it will do the same for me I would love to feel better! That’s what I’m hoping to do as if I do get them I’ve got to try and juggle it around work (teaching assistant) so can’t book day/ afternoons off, I’ve been told that I would need 3 injections every two weeks,

Thank you for your help x

[Lizzie1956]

I need an injection in each limb every 4 weeks. Not great, but compared with constant admissions- a walk in the park!

[Hidden in reply to Lizzie1956]

Yes I agree completely!

[K8ty25]

I get 3 injections every 4 weeks. I have seen an improvement in my asthma although it hasn't been a wonder drug for me it has definitely helps. I got my referral in Sept 18 and my first injections in March 19.

I find mine tend to sting while I get them but that fades quickly. I don't know about other hospitals but I started out with staying for 4 hours and then every week its decreased and now I only stay 20 minutes after injection.

I hope this helps and you can get seen quickly

[Hidden]

Thank you that is very helpful x

[hilary39]

Answers to a few of your questions below, let me know if you have any others!

1. How long will I have to wait for before after?

For me, I only had to wait 30 min after my first shot to make sure I didn't react. Since then I've been able to go home asap after the shots.

I've been on it for seven months and it kicked in slowly for me, I think it's still ramping up. For other people it works a lot more quickly. I haven't had side effects that I can tell (but I'm not certain because I've also had adrenal insufficiency starting at around the same time from being on prednisone too much and I can't tell which symptoms are which!)

2. Does it hurt?

Nope, just like any other shot or vaccination. It hurts a teensy bit more in the thigh than the arm.

3. Is there a set day?

Every 30 days

4. When can I inject it myself?

In France it's after 4 months but I still go to the nurse bc I don't really want to do it to myself